Lack of support from local jdrf

My son was dx on June 14, 2010 with T1. He was 16 months old. After coming home from the hospital I got on jdrf’s website and requested lots of information including a mentor in my area. I also signed up to be a volunteer and asked to be on their mailing list. A couple months went by and I heard nothing. I came across someone who does work with jdrf and she knows the community coordinator in my area. She took my information and said she would pass it along. I never heard back. After we passed his 1 year anniversary, I decided to try again. I sent JDRF an email and also called and left a message. The next day I called again and got through. The woman apologized and said she would send him a hope bag and also pass my information along to their volunteer coordinator. 5 days passed before the volunteer coordinator called me. Unfortunately, I wasn’t available and she had to leave a message. The same day I called back and left her a message. The next day I left her another message. That was over a month ago and I still haven’t heard back. I am not sure what my next step will be. I want to attend a support group in my area. If there isn’t a group, I want to devolop one. This would be much easier if I had support from jdrf.

Any suggestions?

We had the same problem with our local JDRF. We went to the first event we found out about and not one person introduced themselves to us. Then my son did the walk and they sent him the wrong size jacket as his reward. We tried to exchange it and sent it back. They never sent a new one and when I contacted them they wanted proof of mailing the first one back, which I unfortunately forgot to keep.

So anyway - have you asked at your ped. endo’s office? Sometimes they have groups. Also, it’s not the ADA’s thing, but they have a lot on their website that might help you connect with others. I’ve given up on the JDRF for other reasons as well, but I’m trying to stay connected through CWD, TuDiabetes etc.

My endo’s office refers us to jdrf. They do not have any support groups set up but one of the nurses wants to start something. She’s been talking about it since he was dx. I’ll try CWD. I’ve seen the site but haven’t done much with it. Do you know if tudiabetes has groups by state?

Thanks for responding.

I was in the same boat. Our local chapter is lacking in outreach also. ALthough the main focus of the JDRF is research, they also claim the outreach aspect. In the hospital, I was given the same information about a support group and family mentor. To a newly diagnosed parent/child/adult, this offers such false hope in a time of dire need. I too, heard nothing. The bag of hope did not contain the emotional support I was looking for.

I decided to create my own group on FaceBook. It is slowly growing. And as I have come to learn, there are many people with Type 2 diabetes also looking for support. SO what was just a Parents of Diabetics site is now open to anyone affected by diabetes.

While searching the web for support, I came across the DOC - Diabetic Online Community. I will gladly shout from the roof tops that they saved my sanity. The DOC can be found blogging and tweeting almost every minute of the day. There are so many people out there dealing with the same issues I am on a regular basis…I no longer feel alone. I have come to rely on many of them for diabetes advice.

Of course, this does not fill the void of a local support group. I stomped my feet quite loudly here in Birmingham, and there is now an Outreach meeting in the works for August.

My advice - don’t wait for something to happen. Make it happen. Feel free to join my FB page. Id love to have another parent add info. You are also welcome to use whatever information I have on the site. I borrow most material from other sources anyway. (Im not looking to recreate the wheel, just make it bigger. I always give credit to the person/site I find it on. =) )

My site has a Notes section where you can find many of the DOC bloggers. I plan to add twitter Names also…(maybe even today. Having 2 young children at home, I do not get much quiet computer time.)

My site can be found on FB. Just search Diabetics of Birmingham. =)

Any chance you are in the metro NY area? My doctor’s office runs a support group for parents of toddlers and preschoolers with Type 1 - it has been very helpful (I am on Long Island) - they have babysitters(T1s themselves or parentsor professional who deal with T1s) for the children and their siblings during the meeting. I have had better luck with our JDRF - they have parent meetings monthly except over the summer. It is amazing that every time I go I don’t recognize any of the parents - sad how many new cases there are.

I’m actually in Delaware. I talked to a nurse educator at the endo’s office back when he was dx and she said she’s been trying to set up a support group. Maybe I should try to reach her and go from there. Thanks for the information!

Hi im sorry you had such a bad experience with JDRF , its so hard when you search for support and can’t get it.
What area are you in ??


Thanks Rhee. We’re in Delaware.

Hi, Celeste, We’re in Brooklyn. Your Dr. office sounds wonderful! Our Endo is developing a good Institute, but we don’t have babysitters, etc. The JDFR meetings meet at our Endo’s office, but I don’t usually have the time to go to them since they’re in the city.